In December of 2017, my body begin falling apart. My physical fitness regressed substantially after two years of resistance training progress. I woke up tired and yawned constantly throughout the day, deeply offending friends and family. I struggled to stay alert at work and in conversations, and my acute sensitivity to caffeine slowly dissipated.

I became increasingly irritated with my body. I ate healthfully, exercise daily, slept adequately, ensured that everything that entered our home was organic, maintained positive relationships, practiced mindfulness and luxuriated in small acts of self-care. I was doing everything right, so I couldn’t help but ask, “What gives?”

When I contracted valley fever in March 2015, I was bedridden for a full month. My body weight dropped by 14% and quickly sunk into “underweight” territory. While a handful of people congratulated me on my rapid weight loss, most looked on with horror. I did not look healthy.

Within six months, I was back up to my normal weight and, by most accounts, no longer looked like I was dying. But my energy level never fully returned post-infection and everything I attempted was just a tad bit harder than it used to be. Have you seen those intense elderly women who speed-walk with weights around their wrists and ankles? The exerted effort is sustainable for a bit, but it sure would be exhausting to constantly run at full speed with the burden of that extra weight.

From April 2015 through December 2017, I did just that. I worked long hours, worked out, maintained relationships, pursued numerous hobbies and did my best to reclaim my old life. Valley fever was merely a blip on the radar, one month and some change that had been permanently lost to the abyss. I tried to make up for lost time. Yet, at the end of each day, I would literally collapse into bed, attributing the fatigue to some leftover residual. I convinced myself that I was healthy, or at least right on the brink of 100%.

Everyone told me that I looked good and I parroted back the mantra to myself, secretly wondering when I would actually feel as well as I claimed.

I kept pushing until one year had become three and my health was, undeniably, getting much worse. As I’ve captured across this blog, my body has been probed for every kind of disease, from cardiovascular and neurodegenerative to infectious and onconological. I’ve had MRIs, PET scans, skin biopsies, a spinal tap and my body weight in blood drawn. As I racked up $80,000 in medical costs, everyone (including the doctors) keep repeating the same damn phrase: “but you look healthy!” It felt as if they were downplaying my condition or sneakily beating around the drama queen bush. It took everything in me not to growl in response, “I am not a hypochondriac!”

At the end of the day, I would often exert the last few drops of my limited energy crying. I couldn’t help but question whether it was all in my head, whether I had somehow made myself sick. Let me tell you, that is one of the worst feelings I have ever experienced. Just because someone looks healthy on the outside, that doesn’t necessarily mean that things are functioning smoothly internally.

Based on my laundry list of symptoms and the results of recent labs, my integrative doctor suspects Sjögren syndrome with extraglandular involvement. This is a long-term autoimmune disease in which an infection triggers a major immune response, but a particular gene inhibits the body from recognizing when the infection has cleared. Basically, if she’s right, my immune system has been in overdrive for four years, fighting a long-gone fungal infection.

This may explain why I’ve had “antibiotic-resistant pink eye” for three years, a constant dry mouth, more cavities in the past year than in the two decades prior, inexplicable muscle pain, recurring rashes, a chronic cough, brain fog, consistent 1:64 cocci titers and multiple “mildly abnormal” organ function results. My body is trapped in survival mode, flooding my body with antibodies as it continues it’s “seek and destroy” mission.

My body is literally attacking itself from the inside out. Unlike self-harm or eating disorders, no one can visualize the ways in which my body is sabotaging it’s basic functions. I look healthy, aside from a hint of sleep-deprivation and the few extra pounds I’ve picked up since my energy has dropped.

I want to issue this as a reminder that empathy is the best approach to these situations. Telling someone who feels ill that they look healthy can come across as harsh, hurtful and insensitive. It felts so much better to be greeted with understanding and receive small gestures of love and support. Draw a warm bath for a loved one, deliver a pot of fresh soup to a family member and offer a listening ear when a friend is clearly distressed. The best thing in the world we can offer one another is compassion and companionship. There is no limit on how much we can give.

For the first time in a long time, I’m not just alive, but actually living. For the first time in such a long time, I feel as good as others claim that I look. Sure, I still have some mysterious growths in my legs, but today I can actually jump up and down with joy (without my knees giving out)! You better believe I don’t take that for granted. Though we’ve yet to confirm and resolve the root cause of my symptoms, the Low-dose Naltrexone I’ve been taking for the last few days has changed everything for me. You can ask my boyfriend to confirm, as I’ve definitely told him at lest 500 times in the last 96 hours. Haha!

I feel like myself again, and it has been so damn long that I’d forgot what the essence of “me” felt like–a geyser of positivity, a wealth inspiration, a source of unwavering support, a bucket of novel ideas, a great problem-solver and a compassionate soul. I’ve gotten misty eyed a dozen times across the last few days, including right now because it feels like I’ve come home to myself and this little home in my heart is just as I left it a few years ago. I don’t think I’ve ever experienced such overwhelming gratitude or such a depth of joy in my entire life. I keep closing my eyes, face surely beaming, whispering, “Thank you! Thank you! Thank you!” to no one in particular.

My hope has been wavering haphazardly in the uncertain breeze for months, but I now feel confident that we’re making strides in the right direction. Even if this turns out to be something nastier than autoimmune disease, I’ll be okay. I’m actually looking forward to the next time someone asks me how I’m feeling and being able to respond, “I feel great! Really and truly, I’m feeling good.”

I resonate with this 100%! Most people look for what illness looks like on the outside, that it sometimes invalidate what illness feels like on the inside. “It feels like I’ve come home to myself..” — this tugs at my heart strings. I am genuinely so happy for you, and wish you continued progress with health and life from here!

Invalidation is the perfect word. Prior to receiving a diagnosis (that terrible yet validating name tag that reads “Hi! I have ________.”), it’s so easy to question whether the symptoms are even real. What right does anyone outside of ourselves have to make that judgement? Yet, we sometimes hand over that power.

I have been in a state of complete bliss for the last six days! I’ve been celebrating an abundance of small victories, the biggest being that I actually feel like myself…not some lethargic and irritable shell of myself, but ME! I truly believe things will only get better from here! ❤

I am happy to see that your health is going towards the right direction.

I don’t have any physical issues. My mental health is more a problem.
People never believe because “I have it all”. A good job. Nice boyfriend. 4x a year going away on a trip. Good salary.
So I seem healthy, but they don’t know how messed up my head is.
And I cannot show it.
I really do understand what you are saying!

I’m sorry that you’re going through that. I’ve dealt with bouts of depression here and there, so I understand how difficult it can be when people downplay what feels like a debilitating weight or insurmountable hurdle. Unfortunately, I’ve noticed that by and large, humanity is not too empathetic… I think it would make a world of difference if people would listen to one another and, even if they don’t understand exactly what the other is going through, simply be loving and compassionate. Sending a big hug your way! ❤

I went through something incredibly similar and know exactly how you feel! Knowing something wrong but all the doctors telling you there isnt! It wasn’t until I lost complete vision that I was diagnosed with a super rare neurological disease called Neuromyelitis Optica. Thankfully with that diagnosis I have been able to gain some vision and life back! But that in between time, when you KNOW something is wrong but they can’t find it… is truly exhausting! So glad you got some answers!!